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Tag: hope
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One Boys Fight For The Right To LIVE
One Boys Fight For The Right To LIVE
Alfie Evans is at Alder Hey Hospital in the PICU. He has been hospitalised continuously since December 2016, dealing with chronic seizures of an undiagnosed disorder. The hospital has given up on him and applied to the High Court to remove parental rights and withdraw ventilation to end Alfie’s life. Yet Alfie and his parents are FIGHTING!
Alfie has been been at Alder Hey in Liverpool PICU since December 2016. After a year of being there, this hospital has still not done procedures which should have been done a long time ago, like a tracheostomy and a PEG tube. This would be done immediately as soon as Alfie gets to the European hospital who is ready and willing to take him. The only thing stopping him from going to this hospital – is Alder Hey and their turning to the court. They have given up on him!
Alfie’s parents are in court tomorrow , as the hospital wishes to appoint a guardian.
Alfie has been given a chance at this European hospital who is waiting for Alfie to try and treat and diagnose his illness.
Alfie has not been diagnosed with a terminal illness, HE IS STILL UNDIAGNOSED. Yet, ALDER HEY have put in an application to REMOVE HIS LIFE SUPPORT!
Please do not let them do this to him. Lots of disabled children live happy lives. Alder Hey say that “Treatment is futile” and He has “no quality of life.” Being disabled, doesn’t mean his life should be written off.
Alder Hey say that Alfie is “insensate” and that He “feel nothing”. Alfie does react, He stretches, He sneezes, He opens his eyes, He sucks a dummy, HE IS AWARE! and HE IS LOVED
Please sign my petition so that Alder Hey will #RELEASEALFIEEVANS. https://www.change.org/p/we-demand-alder-hey-to-release-alfie-evans-to-a-hospital-of-his-parents-choice
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My Baby Has An Inoperable Brain Tumour
This is Edie Molyneux, she is three years old and was recently diagnosed with an inoperable brain tumour, her only chance for survival is a hospital in Mexico who have a number of success stories through this condition.
She has a condition known as DIPG, Diffuse Intrinsic Pontine Glioma, commonly referred to as pontine glioma, infiltrative brainstem glioma, or DIPG, is a rare tumor of the brainstem that occurs almost exclusively in children. A pontine glioma occurs in a most delicate area of the brainstem (the “pons”), which controls many critical functions, including breathing and blood pressure. Its location, as well as the way it infiltrates normal brain tissue, makes it especially difficult to treat.a rare cancer affecting children.
Which in Edie’s case is a tumour in the centre of her brain, making it unreachable by uk standard methods without poisoning her whole body, this is where Mexico come in, they have the advancements to treat and shrink the tumour and have 2 cases of No Evidence Detected in other children.
However we need to raise £300,000 to make this possible, every share, awareness raised and £1 means the world to us.
Here is a photograph of Edie and a scan photograph of her tumour, also a link to her fundraising page, thank you ever so much, your support will be eternally appreciated.
Come on Mums advice ladies lets help this little girl, how much do you pay for a bottle of wine or a chocolate bar? Every pound could make a huge differnce and save this precious angel https://chuffed.org/project/the-spider-ede-appeal
A Chrismas Miracle is what we need
All my love,
Emma Fessey
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Furious Mother Hits Out At Facebook For Banning A Photo Of Her Sick Daughter
Furious mother hits out at Facebook after a photo of her toddler is banned – because her rare skin condition looks ‘undesirable’ and would make others ‘feel bad about themselves.
A furious mother has hit out at Facebook after it banned a photo of her one-year-old daughter, who suffers from a rare condition that causes her to break out in blisters at the slightest touch.
Rhiannon Atkinson, 30, posted pictures of Pippa’s feet to raise awareness of epidermolysis bullosa (EB) – which strikes one in 50,000 people.
But she claims the social media giant sent her a message branding one image of her daughter, who is left in unbearable pain due to the condition, ‘undesirable’.
Facebook told Mrs Atkinson, who can’t cuddle or even hold her daughter’s hands, that such pictures are banned because they make users ‘feel bad about themselves’.
The offending image is of Pippa’s foot and reveals the extent of her condition – around 90 per cent of her hands and feet are without skin and red raw.
Mrs Atkinson has previously spoken about how she has to restrain Pippa when she dresses her in bandages to stop her catching any deadly infections. She finds it upsetting as it goes against her motherly ‘instinct’.
Mrs Atkinson, from Cwmbran, South Wales, said: ‘I went back to them [Facebook] to say that’s ludicrous and that we were trying to highlight my daughter’s condition.
‘Even after they reviewed it they were still not willing to change their minds.
‘People have told us the images make them feel sick – that’s fine some people have nothing better to do than pick on a baby.
‘But for a huge corporation to say that – that stunned me.’
What did Facebook say?
Facebook said that the image Mrs Atkinson was trying to use ‘depicts a body or body parts in an undesirable manner’.
It also said that adverts should not depict certain body weights as being ‘perfect’, or any health conditions as being ‘extremely undesirable’.
As examples, it used ‘close-ups of “muffin tops”, where the overhanging fat is visible’, people with tight clothes and conditions painted ‘in a negative light’.
It also said that ‘adverts like these are not allowed since they make viewers feel bad about themselves’.
Facebook has been contacted but did not respond at the time of writing.
Pippa gets 50-60 blisters a day. She has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction.
As she grows, and develops the urges to crawl and walk, her hands, knees and feet constantly have to be bandaged, Mrs Atkinson said.
Pippa takes morphine and paracetamol to cope with the pain. Some days she needs sedatives to relieve her.A nurse and carer rolled into one
Mrs Atkinson said: ‘I am Pippa’s nurse and carer all rolled into one. In some ways when I am dressing her she must hate me because I am causing her so much pain.
‘But on the other hand, if she’s upset, I’m the person she looks for.
‘I dread the day when she can tell me to stop doing something because you always have to get her dressings finished.’Mrs Atkinson, speaking last month, said: ‘As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water.
‘They were red raw and she was whisked off to intensive care.
‘Being told your child has an incurable condition is incomprehensible, it broke my heart.
‘But then not being able to touch her, or cuddle her for five months was torture.
‘I’d never known anyone with this condition so it was a complete shock when we were told it was going to get worse.’Plan of aftercare
Mrs Atkinson stayed with Pippa and husband, Damian, 36, in hospital for 23 days as nurses decided to best plan of aftercare for their baby.
Once she was discharged from hospital, Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months.
Mrs Atkinson added: ‘When she was born I couldn’t hold her for five months, she was always on a pillow.
‘Not being able to cuddle your new-born baby is the worst feeling in the world but it would have caused her too much pain.
‘When we would touch her, especially her hands and feet, she would scream out in pain and you could see the true agony on her face.’Bandaged up each day
In hospital, Mrs Atkinson had to bandage her daughter’s hands and feet four times each day. She was trained by specialist nurses.
She now knows how to bandage and clean Pippa’s skin thoroughly in the comfort of her own home to reduce her risk of infection.
Mrs Atkinson, from Cwmbran, South Wales, said: ‘I went back to them to say that’s ludicrous and that we were trying to highlight my daughter’s condition’.Mrs Atkinson said: ‘She now has blisters on every inch of her body – on her eyelids, in her hair, her mouth and up her nose.
‘So we have to clean the house at least 10 times a day, because if dirt gets into her blisters it can cause infection.
‘Whenever she gets a blister me and Damian have to restrain her so that we can get the fluid out of her skin.
‘That goes against every natural instinct in your body – having to hold your baby down and know that you’re hurting them.’
Alongside all of the maintenance that the family have to endure to keep Pippa safe, it is also a struggle to let her do simple day-to-day things.
Mrs Atkinson said: ‘For months she could only wear her clothes inside out, as the seams caused her to blister.’
Now she has clothes which are custom-made without seams. Every day Pippa has full dressing changes. These can last up to two hours.
Her blisters are lanced with scissors, dead skin and scabs softened to remove them without damaging new skin underneath.Mrs Atkinson, who gave up her banking job to care for Pippa, said: ‘She is now nearly 14 months old and hasn’t started to crawl or walk yet.
‘Because of her blisters the pressure on her knees or feet would cause too much pain.
‘Every normal process takes ages too – it takes over 20 minutes to change her nappy because of all of her creams and lotions and 45 minutes to have a quick bath because we’ve got to get all of the scabs off of her.
‘I have to change her clothes six times a day too, because her skin bleeds so easily.
‘She wakes up at least four times every night screaming out in pain because she’s moved and hurt a blister or touched her skin in her sleep.’
Her condition is slowly improving
Despite Pippa’s condition covering her whole body, Mrs Atkinson has noticed that she is slowly getting better.
Mrs Atkinson, who is now trying to raise awareness of the condition, added: ‘Luckily, we can cuddle her every day now as her EB has slightly improved.
‘Because Pippa’s condition is genetic, I’ll never have any more children just because of the risk.
‘I wouldn’t change her for the world and we are doing everything in our power to ensure she leads a long and happy life.’
Earlier this year Pippa fought off Streptococcal A which can cause meningitis. She is battling that again at the moment, along with Streptococcal G.
Pippa’s family are now raising money to build a one-bedroom specialist extension to make looking after the toddler easier.
If you would like to donate towards Pippa’s cause you can do so via their Just Giving page. -
Shocking And Sad Reason Bride Doesn’t Show Up For Her Own Wedding
When Terry Apudo didn’t show up to church for her own wedding, her family and friends immediately knew something was very wrong.
But the real reason for Terry’s absence on such a special day was more terrible than the guests could have ever imagined.
Terry Apudo, was a young female pastor, working in a small church in Nairobi, Kenya.Her wedding with fiancé Harry Olwande, had been in the works for a long time and the couple were in the middle of preparations for the big day.
As tradition goes, the bride and groom spent the night before the wedding apart.
The next morning, as Terry left her house and walked down the road, she noticed a man sitting on the hood of his car.
She walked past him, but minutes later, the man rushed to her and jumped her from behind.
The man violently grabbed Terry and threw her into the backseat of his car, where two other male accomplices were sitting and waiting for her.
The young pastor was kidnapped on what was to be her wedding day.
“A piece of cloth was stuffed in my mouth. I was kicking and hitting out and trying to scream,” Terry said “When I managed to push the gag out, I screamed, ‘It’s my wedding day!’ That was when I got the first blow. One of the men told me to ‘co-operate or you will die.’”
The nightmare didn’t end there — the horror continued inside the car. Terry continued to tell her story:
“The men took turns to rape me. I felt sure I was going to die, but I was still fighting for my life, so when one of the men took the gag out of my mouth I bit his manhood. He screamed in pain and one of them stabbed me in the stomach. Then they opened the door and threw me out of the moving car.
I was miles from home, outside Nairobi. More than six hours had passed since I had been abducted.
A child saw me being thrown out and called her grandmother. People came running. When the police came they tried to get a pulse, but no one could. Thinking I was dead, they wrapped me in a blanket and started to take me to the mortuary. But on the way there, I choked on the blanket and coughed. The policeman said, ‘She’s alive?’ And he turned the car around and drove me to the biggest government hospital in Kenya.
I arrived in great shock, murmuring incoherently. I was half-naked and covered in blood, and my face was swollen from being punched. But something must have alerted the matron, because she guessed I was a bride. ‘Let’s go around the churches to see if they’re missing a bride,’ she told the nurses.”
“By coincidence, the first church they called at was All Saints Cathedral,” Terry went on to say. “‘Are you missing a bride?” the nurse asked. The minister said, ‘Yes, there was a wedding at 10 o’clock and she didn’t come.’”
When the wedding guests found out the real reason for Terry’s disappearance, people started screaming and crying inside the church.
Terry’s family and her fiancé, Harry, rushed to the hospital immediately. Eventually, Terry was moved to another hospital, where the full degree of her physical injuries had become painfully apparent.
“That was where the doctors stitched me up and gave me some devastating news,” Terry says.
The doctors told Terry that the stab wounds were so deep that she wouldn’t be able to have children.
“I was given the morning-after pill, as well as antiretroviral drugs to protect me from HIV and AIDs. My mind shut down. It refused to accept what had happened.
A few days later, when I was less sedated, I was able to look him [Harry] in the eye. I kept saying sorry. I felt like I had let him down. Some people said it was my own fault for leaving the house in the morning. It was really hurtful, but my family and Harry supported me.”
Despite everything, Harry still wanted to marry Terry — the love of his life.
The ceremony took place in July 2005, seven months after their first planned wedding.
At last they stood at the altar together and were able to celebrate and display their love for one another.
Everything seemed to be taking a turn for the better, but destiny sometimes works in mysterious ways.
Only 29 days after they finally got married, another catastrophe occurred.
During a very cold night, Harry decided to warm the house with the couple’s little charcoal stove, which was usually used outdoors for cooking.
Unfortunately, the couple fell asleep when the heat started spreading in the room. When Terry woke up a short while later, she realized something was not right.
She was dizzy and couldn’t get out of bed. With the little strength she had left, she managed to reach the phone next to her bed to call the neighbors for help.
Right after that phone call — she lost consciousness.
Terry was able to be rescued in the very last moment, but sadly, it was too late for Harry. He died of carbon monoxide poisoning.
Terry went into a state of depression so bad that she shut herself off from the outside world.The only visitor she would receive was a pastor named Tonny Gobanga. He regularly visited Terry at her home, so she could talk to him about the pain that had gotten stuck deep in her soul.
Tonny’s warmth and compassion gave Terry new life and helped to slowly mend her broken heart.
Eventually, with time, the two fell in love.
“Tonny proposed marriage but I told him to buy a magazine, read my story and tell me if he still loved me. He came back and said he still wanted to marry me.But I said, ‘Listen, there’s another thing — I can’t have children, so I cannot get married to you.’
‘Children are a gift from God,’ he said. ‘If we get them, Amen. If not, I will have more time to love you.’”
Three years after her marriage with Harry, Terry once again walked down the aisle, this time with Tonny, who had given her the will to live again.
Sadly, her life looked like it was taking another dark turn — one year after her second wedding, Terry felt very sick.
“I felt unwell and went to the doctor,” she says. “And to my great surprise, he told me that I was pregnant.”
Terry’s pregnancy went smoothly. Contrary to the doctors’ words, Terry seemed to be completely capable of giving birth without any complications.
The joy that Terry and Tonny felt holding their newborn daughter Tehille in their arm was indescribable.
Four years later, the pair welcomed their second miracle — their other daughter Towdah.
The men who tortured and raped Terry were never arrested and brought to justice.Terry’s full story is documented in her autobiography “Crawling Out of Darkness.”
Today Terry travels with her husband Tonny and gives talks. She speaks about the horrific things she has been through and how she got the strength to pull herself out of the darkness and look at the positive things in life.
She also helps other rape victims and hopes her experiences can inspire them to know that they are not alone.
Please share this on Facebook to give others hope .
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Cancer and Hope
Miracles really do happen & dreams really do come true …
Third of May 2011 I was diagnosed with stage 3 breast cancer at the age of 21 becoming the youngest in Wales to ever be diagnosed with the heartbreaking disease.
My first question was am I going to die? My second- what about starting a family of my own in the future? I was told that my treatment would be so intense that conceiving naturally and carrying my own child would be very unlikely, for the second time that day my life fell to pieces in front of me.
I was offered the option to freeze my eggs for the future but would delay treatment for 3 months – another risk I wasn’t willing to take, my only option was to hope, wish & pray that everything would be ok and work out for the best.
10th of August 2015 came another devasting blow where I suffered from a hetrotopic pregnancy losing 2 precious babies & one of my fallopian tubes in the process (something that is so rare it only happens to 1 in 50,000 cases) BUT there was a positive I was able to take from this – I was able to conceive naturally, something that I was always told that wouldn’t happen for me after the intense treatment.
But with every positive comes a negative – I now only have one fallopian tube which gives me less chance of conceiving. Again I could only hope that one day it would happen for me – I was determined to never give up.
4th of March 2016 – I received my 5 years ALL CLEAR, i survived cancer and i am now out of remission! Now that a massive weight had been lifted off my shoulders I could finally think of what the future holds for me.
22nd April 2016 – I found out I was 9 weeks pregnant!! Every day since I found out I was pregnant it has been a struggle constantly worrying. I know that this baby is an absolute miracle and I feel completely blessed that I am able to carry her and have her grow inside me.
The doctors still don’t understand how it’s possible considering i was on tamoxifen (a hormone blocker that you cant get pregnant on) and they are just as shocked as I was when I found out but this is even more the reason why she’s so precious to me.
15th of November 2016 – The happiest day of my life when I gave birth naturally to the most amazing, perfect, beautiful little girl anyone could ever wish for – my daughter, my world, my miracle!
I am completly blessed to have her in my life, I cannot believe that she is here safe and sound in my arms – dreams really do come true!
In February this year i found out i was expecting another little miracle, i cannot wait to meet my bundle of joy and see my two little miracles bond and grow up together. I am well and truly blessed and thank my lucky stars that i never gave up hope of becoming a mother!
My moto in life will never change- stay strong, stay positive, keep smiling & always remember there is always someone somewhere worse off than you!
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Britain’s Youngest Sepsis Survivor
This is a story of Awareness for Group B strep & sepsis.
During my pregnancy I was given a swab to check for Group B strep, it came back positive twice & negative twice.. But I was given the recommended amount of antibiotics during labour. On the 9th October 2015 Amélie was born not breathing, agpa score of 2, extremely swollen and floppy.
The Drs and midwives resuscitated her and she seemed to be ok I throughout the day.. To a new first time mum I just thought it was normal and had no idea she was really severely ill.
Throughout the day she wouldn’t feed, didn’t wake unless midwives stripped her, she was very swollen, purple and was breathing too fast – however midwives and I were reassured it could be because she wasn’t breathing at birth.
She was so swollen
In the evening my midwife came round to do checks on her, she found that Amélies temperature was too hot on one side but too cold on the other side of her body, her oxygen levels were different from her hands to her feet.. Still very purple, swollen and non responsive my little new born was rushed up to The NICU Where IV antibiotics were immediately started.
She was taken for a chest X-ray, multiple blood tests, oxygen pumped into an incubator and a lumbar puncture, she was so poorly my baby didn’t even cry when a large needle was placed into her spinal cord.. She just fell asleep on the nurses hand.. That really breaks my heart.
Amélie wasn’t aloud any milk for a few days either, if her stomach expanded it out too much pressure on her lungs and she couldn’t breathe so was glucose drip fed before eventually going onto an NG tube.
I remember sitting with her, reading stories but being interrupted by the beeping of machines, the noses that never leave you. I remember being aloud to hold her, but being caught up in wires instead. I remember learning to feed my baby girl through an NG tube instead of with a bottle like all my friends could with their babies.
Amélie was born at 8lb8oz, as the antibiotics worked she started to lose weight.. Eventually getting down to finding that she had around 3lbs worth of extra weight through swelling.
At 5 days old Amélie pulled her cannula out which meant she had to be transferred to a different incubator and the Drs attempted to leave her without extra oxygen or tubes for 30 minutes to see how she would react.. My amazing Amélie started breathing properly on her on and miraculously at 5 days old got the all clear, the sepsis was gone.
The NICU nurses bought her downstairs to the room me and my fiancé were staying in as a surprise, I thought she was coming for a visit with the machines but we were told we could keep her, to be with just us and no one else. I could look after my baby girl, and that was the most incredible feeling.. I will never forget it.
I didn’t feel like she was mine, from the second she was born being whisked off to save her life and then just a few short hours later being taken again.. But after that I felt free and at peace.
Amélie is 21 months now, still tiny at almost 21lbs.. she started walking At 10 months which is amazing.. She has a few health concerns, however unsure whether linked to having sepsis as a newborn yet.. Other than that is the most happy and loving little girl, I couldn’t be prouder. She has been named Britain’s youngest sepsis survivor and along with her daddy we have raised almost £900 for the UK sepsis trust.
Amélies sepsis was caused by a Group B strep infection, something that is totally preventable.. I had antibiotics during labour so our little lady was a Fairly rare case to still get poorly.. But could you imagine if I didn’t know, if I didn’t get any antibiotics? I know my baby wouldn’t be here. Not every hospital openly give GBS test however through the ‘GBSS’ charity you can purchase your own test for a small amount of money, which is a very small price to pay compared to the possibility of losing your new born baby.
The websites for all information on sepsis and GBS are here, please do some research & learn the symptoms of sepsis, getting help as soon as possible is what will potentially save a life.